How a doctor turned his shattering diagnosis into a defining mission

On Monday, footy fans at the MCG will don blue beanies and watch champions plunge into pools of ice, raising awareness and funds for Motor Neurone Disease. Ian Davis is the man behind the spectacle, devoting his numbered days to beating MND. Charlotte Grieve reports.

While many 40th birthdays are celebrated with some form of mid-life extravagance, Dr Ian Davis’ rolled like any other day. Strapped to a ventilator and bound to his bed.

He spent the occasion watching his computer as hundreds of messages poured through. “You’re a true hero” one read. People thanked him for bringing perspective and inspiration to their lives. Others vowed to keep fighting the disease that is slowly paralysing him.

His birthday was last Sunday, a non-shower-day in his set weekly schedule, meaning it took his carers half the usual time, 90 minutes, to get through the morning rituals. Davis’ Motor Neurone Disease (MND) has developed to the stage where he now needs constant care.

“I have bad days where I feel sorry for myself,” he says. “But there’s always people who are worse off than you.”

Our interview takes place in the bedroom where he is confined for most of his days. It’s interrupted for a moment when his three-year-old son, Archer, slinks into the room. “Hello Archie Bear, give daddy knuckles.”

Archie taps his fist against his father’s fragile hand, before leaving with his mother, Melissa Yang, for kinder.

In 2011, Davis discovered he would likely die in 27 months – the average life expectancy of an MND patient. This shattering insight came as a consequence of his work, at the time, as a haematologist at the Peter McCallum Cancer Institute. One of his patients complained of nerve damage in his left toe, a side effect of chemotherapy. To examine the nerves, he asked the patient to stand on his toe. He couldn’t. “But at the same time, neither could I.”

Later that night, he noticed his foot slapping the ground as he walked. At that moment, 11 years of medical school told Davis it was serious.

There is no test for MND, it’s rather a process of eliminating other conditions. After a week of biopsies, tests and scans, Davis’ fate was confirmed. Seven years later, he is now part of the five per cent of those living with MND that survive beyond five years after their diagnosis.

“With any disease there’s a range,” he says. “I’m one of the lucky ones.”

MND is a devastating disease. It’s a neurodegenerative condition that affects the nerve cells that control the muscles that enable you to move, speak, breathe and swallow. As the disease progresses, slowly you become paralysed. Patients lose their ability to walk, speak, and eventually breathe.

There’s no effective treatment or cure. At each “stage” of the disease, patients must confront their reality to make a series of decisions about whether to prolong their life. To have or not to have: wheelchairs, ventilators, feeding tubes, carers, resuscitation orders. Davis says that each decision is about weighing up the quantity and quality of life.

“It’s all palliative treatment. So without this [ventilator], I’d die.”

If you want quantity, you have to surrender to the disease. For years, Davis refused the help of carers. “I was a proud fool,” he says between deep nasal breaths.

“I was a doctor working in a busy hospital. Completely independent. Fit, running every day. To be at a point where strangers have to look after you. Get you naked. Dress you. Take you to the bathroom. It’s really undignifying. For somebody who used to be proud of what I had achieved, and what I was doing. It’s a big slap in the face. And sometimes very hard to deal with.

“But I’ve just had to basically come to the realisation that to keep moving forward I need the help of others.”

Davis grew up in Patterson Lakes on the Mornington Peninsula. One of three brothers, he played sports, had friends and was educated at a private school. “I had every opportunity afforded to me. It was a great childhood.”

Upon completing his tertiary education, he began working in oncology wards while undertaking on-the-job specialist training. Sickness was familiar to him. He regularly told patients they would soon die. When dealing with life-limiting diseases, he says “there was always something in the drawer.

“You know, a patient would come to you with lymphoma or leukaemia, there was always a clinical trial. We always had drugs available.”

But when he was diagnosed with MND, “there was nothing in the drawer. It was empty”.

That area of research was “totally underfunded”. Research scientists were moving away from neuroscience to more lucrative fields, such as cancer and cardiovascular disease. “Scientists have to eat too,” he observes pragmatically.

During his years at Flinders University, Davis could never have imagined that his most powerful contribution to science would be in becoming his own guinea pig. This year, he donated skin cells to a world-first drug screening program of his design.

The program is currently underway at Melbourne’s Florey Institute. It uses Nobel Prize-winning stem cell technology to rapidly identify potential new drug discoveries. Any Victorian living with the disease – a population of around 400 people – has the opportunity to contribute his or her stem cells to the project. A specialised “robot” screens thousands of drugs per week ultimately leading researchers to being able to identify potential drug breakthroughs 160 times faster than previously possible.

“That was a big investment, but it’s a world first. And it’s pretty exciting,” says Davis, whose foundation funded $5 million of the project.

Since the beginning, Davis’ work with the foundation has been voluntary. Last year he retired as CEO but continues to lead the research arm. Using eye gaze technology, he controls a computer to read and score research proposals and coordinate the 700 patients currently on clinical trials his work has funded. Sometimes his eyes water from the strain.

“It gives me a purpose each day.”

He’s fighting for a future that will not arrive in time for him. From the start, he’s been aware that he would never benefit personally from the discoveries of his research. But his lips form a smile under the mask of the ventilator as he thinks of what’s to come.

We’ve been speaking for over an hour, but his enthusiasm does not fade. “You’ll remember the day you sat here and we talked about this when you hear on the news that there’s a new drug. You can say you knew Ian.

“We’re really close. I truly believe within the next 5-10 years we’ll find something truly effective.”

Ian Davis and Scott Sullivan rode on a tandem bicycle from Brisbane to Sydney to raise awareness and funds for MND. Ian using his arms and Scott using his legs, the 12 day epic journey was made into a documentary, “Legacy: A Ride To Conquer MND.”

Davis’ investment in the disease has been unparalleled. He rode 1000km down the East Coast of Australia on a tandem bicycle to raise awareness while his body was strong. He’s self-funded TV commercials and launched two fundraising beer labels. He’s teamed up with football legend, Neale Daniher, who has also been diagnosed with MND, to focus national attention on this debilitating disease.

In 2012, the “ice bucket challenge” vent viral on social media. First initiated in the US by Peter Frates, a former Boston College baseball player who was diagnosed with the disease the previous year, millions of people including Mark Zuckerberg, Bill Gates and Oprah posted videos of themselves being soaked by a bucket of ice-filled water. Davis and Daniher wanted to seize on that momentum.

“So that’s where the Big Freeze came from. We thought let’s take it a bit further, take it a bit theatrical, build a big pool in the MCG, fill it with ice. Then slide celebrities down it into the ice,” says Davis.

The first year the pair thought they would raise $250,000 and ended up raising nearly $5 million. “It’s just grown since then.”

This Monday, the fourth instalment of the Big Freeze event is set to be the most significant. All 18 AFL coaches have agreed to brave the ice water. The Federal Government will match donations up to $2 million.

“The awareness is huge now,” he says.

When asked about the most rewarding moment in his campaign, Davis pauses. Moments pass.

“We had a gala ball a few years ago. My wife spoke at it and there was a moment in her speech where she said she was proud of me. That stands out. As I said, it’s all been about making her and Archie proud.”

He doesn’t gloss over the horrors of what he faces. Growing up, he never experienced mental health issues. But now, despite his achievements, he has weekly panic attacks.

“I just suddenly realise I can’t move my leg, can’t move my hand. And I’m stuck. Or I suddenly realise I can’t play with Archie or Mel’s in the other room and I can’t go in there. It all comes down to being stuck and not being able to move.”

Despite it all, he’s not giving in. He will soon need to make the final decision faced by MND patients –to get a tracheostomy or not. A device, like the one used by Stephen Hawkins, is inserted into the patient’s neck enabling a ventilator to do the breathing. It could prolong his life by another 10 years.

“I want to live. I want to see my son grow up.”

But with additional life comes additional cost. He presently needs carers eight hours a day, seven days a week. He receives a yearly aged care package of $35,000 from the government which covers only six hours per week. The rest is privately funded, costing upwards of $150,000 a year. The disease has put his family in “enormous debt”.

A tracheostomy automatically means the patient requires 24-hour care. Davis will have to balance the pros and cons and plunge his family further into debt. “Every day costs money.” Despite all his work for his foundation, he receives no salary.

When Davis’ final day does come, the man of no faith looks at the afterlife like a true scientist.

“If you follow Newton’s principles, energy can’t be created nor destroyed. I’ll cease to exist but the heat that my body gives off isn’t going anywhere.”

About The Citizen

THE CITIZEN is a publication of the Centre for Advancing Journalism. It has several aims. Foremost, it is a teaching tool that showcases the work of the students in the University of Melbourne’s Master of Journalism and Master of International Journalism programs, giving them real-world experience in working for publication and to deadline. Find out more →